A little glimpse….

This is an article we have been working on for the school newspaper. I know it will be awesome when it gets published there – but we want the big wide world to really feel these words of wisdom as well. – Mackie’s mom

 

“My name Mackie.

You might think you know me but I can tell you that you do not cause (sic) you only see the crazy way my body acts. My brain is just fine but my body does not listen to it. This is called the body brain disconnect and it means that my body has a mind of its own.

I want you all to know that I hear and see everything and I have the same thoughts and feelings you do. I think about destiny and think that I am meant to be here for a reason. So I am telling you about me and my challenges in the hope that you will be my allies. I enjoy doing some very similar things to you such as doing many of the same hobbies as you, like swimming, running, doing hikes in the woods, playing video games, talking to friends, doing puzzles together, and things like that.

I think that to truly understand my time on Earth you would have to go inside my brain – so I will take you on a little tour – my hearing is so acute that I can hear something whispered from across a loud room – so when you say stuff about me I can hear it all. I have excellent vision as well – I see things that you could only imagine.”

(Note: this is something that he describes as hyper focus, being able to zero in on minute detail. Diagnostically, he has better than 20/20 vision.)

“I am just like you in that I have hopes and dreams and I want to go to college and study mathematics and really have a normal life. Next for me is taking my letterboard to school and being able to talk to you all whenever I want. My letterboard is how I talk to anyone so far.”

(The letterboard is a laminated printed alphabet/numeral card that allows Mackie to spell out his thoughts – he has a growing collection of them, including one with algebraic notations, and one that will allow him to work on Spanish language learning).

Q&A With Mackie

What does it mean to you that you’re able to express yourself now?

It is the most amazing feeling.

How soon do you think you would be able to transition to the keyboard – typing to communicate?

I think I am only a little while away.

How do you feel about your own autism/being autistic?

It is hard being isolated in my own mind.

What does dysregulation look like for you?

Dysregulation is very deceiving  – it makes me seem like I am emotional when I am not.

Where do you see yourself in the landscape of disability?

I can see that I have a disability of speech.

I would like other kids to know: I am stronger than you think.

General Q&A

Where did you learn to do this method? Can I talk with Mackie? The fabulous team at Growing Kids Therapy Center in Herndon, Virginia got Mackie and his family rolling with this “letterboarding” or “spelling to communicate” method. The short answer to the second part of this question is YES! Mackie very much wants to get to a place where he can chat with everyone at school. Right now, his communication partner is his mom, with whom he can “talk” freely. He encourages anyone to talk to him the way they would with any of their other friends, and if you have a question, share it with his staff at school, who will pass it along.

There have been times in the past, and up until now, that Mackie has heard people speak about him with the assumption that he either could not understand or hear what was being said. Some of the words that Mackie has heard are generic, put-down language that has to do with how he “presents”, or appears to the rest of us. One word in particular is on his “hit list” of words he feels we all need to drop from our everyday (or even occasional) usage. Many people might guess what that word is.

Mackie’s response to having heard the R-word many times in his life: “Other than that it is the most hurtful word you could use, so many people use it without thinking. I would ask that you drop the “R Word” from your everyday language. You have so much more to offer the school and the world than some hateful language. Tomorrow will be a new day. I want people to see me and others with disabilities as just like you.”
A message to his peers: “I just want to leave you with the idea that not everyone is the same – I believe that to really understand someone you must get into their thoughts. To do that you must try not to judge but try to walk walk in their shoes – other people might tell you that I must be not really telling someone my thoughts but I am here to tell you that this is real.